Stories

The Human Face of Our Failure to Coordinate Care

Every day, in communities across the country, patients cope with extraordinary pressures from a health care system that doesn't coordinate their care. And family caregivers — including wives, daughters, husbands, sisters, grandchildren, other relatives and friends — struggle to help, often with little or no support.

Feature Stories

CristinaCristina from Texas
After surgery, her mother left the hospital ill-informed about possible complications and returned with a dangerous blood clot.

"My mother takes everything with the attitude of, ‘Oh well, they’re just doing their best.’ But I was angry. When they sent her home the first time, they gave her incorrect information about care and neglected to give her information and medication to guard against blood clots. And then after that, when they sent her home with the shots, she had such a hard time again getting help and information...She hasn’t gotten the care she should have." More »

YolandaYolanda from Georgia
After witnessing the medical ordeals and deaths of loved ones, “I’m just appalled at the way some hospitals and doctors treat their patients”

When friends and loved ones have died, Yolanda has saved their obituaries. Starting with Rosa’s death in 1999, Yolanda has taken particular note of those who died after health care system encounters that she found disturbing. At last count, those death notices numbered 15. More »

Annette Cadosi Wilson.jpgAnnette Cadosi Wilson of California
"This should not have happened," says the niece whose aunt entered the hospital for observation but left after contracting a lethal infection.

At 94, Eleanor was an adventurous world traveler who "never passed up a party," says niece Annette Cadosi Wilson, an interior architect. Although Eleanor had lost her sight to macular degeneration, she still managed her own life and finances. And she still lived alone in the San Francisco house her father built, where it was her nightly ritual to enjoy one Scotch on the rocks. More »

Julie Curry from Iowa
She and eight siblings coordinate care for their mother because "the health care field does not... support those providers who want to work together."

A farm wife and lifelong South Dakotan, Cathleen was just 42 when her husband died, leaving her with nine children ages 2 to 18. Now that Cathleen is in her 80s and grappling with health issues, her children form her support network — with very little help from medical professionals. More »

Sally Jo The Rev. Sally Jo Snyder from Pittsburgh
"Doctors were running every test in the world on her — including some they just had run in March — like she was a guinea pig."

Sally Jo’s 84-year-old mother Dorothy was on the mend — until she contracted an infection in the hospital. Then the quest to ensure good care became "a horror." And by the time her family got Dorothy transferred to a different hospital — an act of sheer desperation — it was too late. More »

Sheila Carpenter from Maryland
"I’m frustrated, I’m overwhelmed, I’m scared and I worry about other people who don’t have an advocate by their side."

For most nanogenarians, the workaday life is a distant memory. But not for Willie. He was in such good health when he entered his ninth decade six years ago that he was still working as a cook, housekeeper and driver for a prominent political family in Washington, D.C. More »

Madeleine Biondolillo, MD from Massachusetts
"Patients should not need a doctor and a lawyer in the family in order to get appropriate medical care."

"The usual experience of a sick older person today is similar to that of an American traveling in a foreign country with no passport, no ability to speak or read the language, and no tour guide, all while deathly ill, often hungry and thirsty, exhausted, confused, and frightened." When Madeleine Biondolillo offered that opinion, in an op-ed article for the Boston Globe, she was speaking both as a physician and as a daughter — one who nearly lost her mother Eloise in a preventable medical crisis. More »

Kate Megargee.jpgKate Megargee from Pennsylvania
A daughter’s work and health take a back seat to the "fulltime job" of managing her 89-year-old mother Althea’s ailments and care

"The doctors we deal with are very good and hardworking and considerate," says Kate. "But there are so many of them: general practitioner, cardiologist, gynecologist, neurologist, podiatrist, pulmonologist, sleep specialist, eye doctor, pain doctor, dentist..." The burden of illness became so emotionally overwhelming that Althea, now 89, was diagnosed with depression — adding one more provider, a psychiatrist, to the list. More »

Kathy Day from Maine
Her father’s ordeal after a minor injury convinced her that "consumers and patients cannot completely rely on our hospitals to protect us and our safety."

Kathy's father was moved to the intensive care unit and because he was too weak to use a bathroom or bedpan, doctors ordered a urinary catheter. "I remember it like it was yesterday," Kathy says. "The nurse said, 'You know, he’s going to get an infection' — and I said, 'What? Is that a given?' And sure enough, in two days’ time, he’s got a urinary tract infection." More »

jan rabinowitz thumbnail.jpgJan Rabinowitz from Atlanta
Failures to coordinate care and medication for her husband’s Parkinson’s disease turned his hospitalization for heart surgery into "an ordeal."

Not long after Atlanta native Jan Harris and Brooklyn native Allen Rabinowitz were married in 1989, Allen began noticing some new aches and pains and, later, a slight, occasional trembling in his hands. In 1998, actor Michael J. Fox went public with his diagnosis of Parkinson’s disease — and months later, at age 48, Allen also was diagnosed with the degenerative neurological disorder. More »

Lucilia Prates.jpgLucília Prates from Boston:
Her father’s hospitalization for elective surgery resulted in infection, complications and "the most horrific six months of his life"

Lucília's father António kept working well past retirement age, until he was diagnosed with kidney stones and followed the advice of a urologist to have them removed, in what he was told was a commonly-performed procedure. But while in the hospital for the outpatient surgical procedure, António contracted a staph infection and that, says Lucília, "marked the beginning of the most horrific six months of his life." More »

Gerald Altman from Baltimore
“Getting my doctors to talk to each other—and to me—was like pulling teeth.”

With no wife and no children nearby, Gerald Altman, 86, is on his own. He lives by himself in a studio apartment in Baltimore. He receives meals and light housekeeping, but he is responsible for managing his health — a daunting responsibility given his multiple conditions: thyroid cancer, gastrointestinal problems and heart disease. More »

Joann Donnellan from Washington, DC
Caring for Patients with Dementia

Joann Donnellan has a lot of ideas about how to improve our health care system. At the top of her list are better training for hospital staff on caring for patients with dementia, and better communication among medical professionals. More »

Susan Crowson from Maryland
"Nobody in the system coordinates Pop’s care. The burden falls to me."

When Susan went back to Tennessee for her mom’s funeral a few years ago, she got some sad news about her father as well: She saw the first signs of Alzheimer’s disease. He didn’t recognize the furniture, he couldn’t find his pajamas, he couldn’t remember his late wife’s name. It was during that difficult trip home that she realized her father could no longer live alone. More »

Christy from St. Louis
A Daughter Protects Her Mother from Dangerous Medical Errors

Why don’t doctors check in with each other when they are treating the same patient? To Christy, 55, a self-employed performer who cares for her 92-year-old mother, Amy, it’s a simple question—but for some reason it has been hard for her to get an answer. Indeed, if Amy’s doctors had just talked with each other about her condition, it would have saved Christy and Amy countless health care headaches, and a lot of heartache too. More »

Courtney Shahan from Washington, D.C.
"There’s no manual for this. There’s no guidebook. There’s no way you can prepare."

Last November, Ann — a retired government worker in Delaware who cares for two parents with Alzheimer’s disease — decided to take a few days off from her demanding caregiving responsibilities to take a short vacation at her second home in Arizona. But Ann’s trip was cut short when she learned that her father only had two weeks to live. More »

Regina Holliday from Washington, D.C.
"No one had all the information they needed to see the whole picture of Fred."

"From January to March of 2009, my husband Fred Holliday went to his physician a dozen times for pain. He visited two ERs with severe pain and was sent home with pain meds each time. After two months of this, I demanded a diagnosis. On March 25th he was hospitalized for tests. On March 27th the oncologist told my husband — when he was alone — that he had tumors and growths. The oncologist then left town for four days. More »

mike dunham Mike Dunham from South Carolina
"We need someone in the system to act as a patient advocate and to coordinate."

As a teen in Montgomery County, Maryland, Mike Dunham worked in the family garage as an auto mechanic.Starting in the mid-1970s, he spent a quarter-century career in garages as an automotive service manager. Though doctors can’t be sure, they suspect chemicals in that workplace triggered the illness that changed Mike’s life forever: microscopic polyangiitis (MPA), in which his immune system turned on him, attacking and severely damaging his lungs and kidneys. More »

Julie SmithJulie Smith from Michigan
A Daughter Says: "Sometimes the complications seem endless"

As those born prematurely often do, "my dad had lung problems for much of his life," says Julie. "In the mid-1970s he was diagnosed with diabetes, which his father had as well. Then in 1997 he wasn’t feeling well, went to the hospital on a Friday and on Saturday they did a quintuple heart bypass on him." Six years ago, he was diagnosed with myasthenia gravis (MG), a degenerative muscle disease. Three years ago he was diagnosed with dementia, probably Alzheimer’s disease. More »

Molly.jpgMolly Glassman from Maryland
Her 85-year-old mother’s recent hospital stays have been "a study in crossed signals and miscommunication."

For almost 50 years, Elizabeth Dunham kept the books for her family’s business in Potomac, Maryland. She raised five children with husband Alvin, and cared for him through illness until his death in 1998. Molly Dunham Glassman had long admired her mother’s "very capable" handling of her personal, financial and medical affairs. Entering her 80s, Elizabeth, "was on the ball about everything," — until a procedure designed to improve her health instead wound up undermining it. More »


Chuck Ross of Massachusetts
"Dad is alive now, I’m convinced, because I’m like a walking medical chart whenever he’s seeing his doctors."

Chuck, who lives on Cape Cod in Massachusetts, has been his father’s primary caregiver since February 2008. He writes about the experience — and the man he identifies only as Dad — in a blog called Life With Father. It’s a way for Chuck both to share what he learns with other caregivers and to work through his own frustrations with that all-consuming role. More »


Fran Cronin of Massachusetts
She experienced a "steep learning curve" in managing the health care needs of her widowed, 87-year-old father.

In 2000, Natalie was diagnosed with lymphoma. Natalie and Marvin’s daughter Fran Cronin, a writer and graduate student living in the Boston area, watched her mother go through years of chemotherapy and other treatments until Natalie could tolerate no more. Medical practitioners kept suggesting additional tests and procedures, Fran says, but with no real hope of giving Natalie more quality time. Natalie resolved to spend her remaining days with loved ones, not doctors, a decision her family supported. More »

Shelia Vulcain of Chicago
While she struggles to manage multiple chronic conditions, she feels as if "each doctor deals with only what they have to deal with then and there, and that’s it."

In 2002, as she stood at a busy Chicago intersection, Shelia suffered a stroke and collapsed on the street. "But right across the street from where I fell was the Northwestern University Hospital emergency room," she recalls. "Was I lucky, or was I lucky?!" After the stroke, Shelia retired on medical disability. More »

Leslie Schlienger from South Florida
"A single patient often has two or three physicians, and I’ve seen some with as many as seven or eight. Patients are overwhelmed by that. They’re lost in that system."

In discussions about health care for vulnerable Americans, "I’m on both sides of the equation," says nurse Leslie Schlienger of South Florida. "I’m a health care worker, and would never bash the good and caring people who do this work. But I’m also a human being who has family and friends with medical needs — and unfortunately, I see people becoming more and more overwhelmed by the magnitude of managing their own health care." More »

Meryl from Arizona
"We need someone to help coordinate the care and be an advocate."

Meryl's father-in-law Ben's health began spiraling down in 2008 when his kidneys failed and he had to go on dialysis, Meryl says. By age 85, he was blind and diabetic, suffered from dementia, had a defibrillator for his weak heart, and was frequently in out of the hospital. "And yet," Meryl observed, "he has never once said, 'I wish this was over, I wish it could end.' I think because the concentration camp didn’t get him, he has this unbelievable survivor wish."
More »


Gloria M. Smith from Cincinnati
This cancer survivor questions "how closely doctors were paying attention" when she asked about symptoms, test results and diagnoses

Even on good days, Gloria Smith’s voice is a hoarse, raspy whisper — and on bad days, it can fail her altogether. But Gloria, 66, keeps talking anyway because there is much she wants to say about the health care encounters that left her in this situation. More »

Karen* from New Jersey
For her father-in-law with dementia plus other illnesses, "it’s back and forth, all these doctors... a nightmare"

Ted* and Ellen* are both in their mid-80s. Though Ellen had a stroke years ago, she had been well enough to manage Ted’s medical care. But as Ted’s dementia worsened and Ellen faced illnesses of her own, she has leaned more on Ted’s son and daughter-in-law. Mark and Karen help as much as they can. But the last year, has been an exhausting roller-coaster ride through different care settings and courses of treatment. More »

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Campaign for Better Care
c/o National Partnership
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info@CampaignforBetterCare.org
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